GALVESTON CITY COUNCIL

As I was driving home after today's City Council meeting, there was a beautiful sunset to the right of me, to my left, dark skies were the backdrop to a beautiful rainbow, and right over us was a thunderstorm.  Seems to be our theme lately -- clear skies ahead. 

The meeting started at 4:00pm, with a full agenda  -- recovery items, beautification items, budget items, FEMA items  --  and renaming the skatepark in Johnny's memory.  When it was time to open up the meeting to the public for discussion regarding the skatepark, Rhonda and Rebecca were the first to be called, then Brax (one of the author's of the proposal) -- they all had very touching tributes/justifications about renaming the park in Johnny's memory.  I really didn't think I could get up in speak -- but then the Mayor called my name. Knowing I wouldn't make any sense if I tried to wing it, I prepared something instead:  

"I'd like to thank the Parks and Recreations Board, Rebecca, Brax, Barbara and everyone who has supported Johnny and kept them close to their hearts.  Even now Johnny's message is global and continues to bring people together for reasons I can't understand or explain.  It would be an honor to the Romano family and hopefully the skateboarding community to have the park renamed in Johnny's memory.

Johnny skated everyday -- healthy or sick, with friends or professionals -- which the average person might find impressive or even brag about.  Yet Johnny who many feel represents the true spirit of skateboarding wasn't impressed with anything remotely related to stature.  Johnny was about a shared drive and love for the sport -- skating has never been about who you are, sponsorships, age, gender or skill.  The universal element that bonds the skating community is simple: a pure passion for the sport.  This quality cannot be learned, taught or practiced.  People who me Johnny quickly felt his passion and knew it reached far beyond skateboarding -- he was passionate about lie, never wasting a moment.  It was his spiritedness that soon became synonymous with what some felt was the true meaning of skateboarding.

For an hour, one Sunday morning last May, the Parks and Recreations board quietly opened the gates to the 'almost public' skatepark -- allowing Johnny to skate on last time before chemo started.  Only now can I understand what a beautiful gift the Board gave our family that day.  It's amazing that when a small town with a heart the size o Texas, told a small boy 'Yes" -- how much impact that one word, for one hour, had on our family -- never knowing it would be Johnny's last time to skate. 

It's the little things in life that make a difference -- just saying the word 'yes' can change a life, a community, a family and has left us with a lifetime of memories that we will never forget -- watching Johnny skate the empty park all to himself, with a big smile on his face and his friends and family cheering him on.  

May the memory of Johnny and his unwavering passion for skateboarding and life, continue to inspire generations of skaters as well as those who have followed his amazing story of strength and courage.  Roll Forever.  Thank You."

I honestly can't remember much about the entire thing, except that two Council members spoke and said they wished they would have gotten a chance to meet Johnny -- then the City voted unanimously to rename the park in Johnny's memory.     It's official.  

We will schedule some sort of ceremony for Saturday, April 25 to celebrate the new name -- and Johnny's 11th birthday. I will update more very soon.  

CITY COUNCIL MEETING

Thursday, March 26, 4pm -- Galveston City Council will vote to rename the skatepark in Johnny's memory.  Everyone is invited -- there is strength in numbers!

City Hall

823 Rosenberg (room 200)

Galveston TX

JOHNNY EVENTS

Here's a rundown of some upcoming events organized by family, friends and maybe the City of Galveston -- all of which need your support!

Race For A Wish - 4/25/09

Mike's cousin Lucille, a teacher at Klein Oak High School, has organized her 3rd annual Make A Wish walk -- this year event is in Johnny's memory.  

Race For A Wish (5k run/walk)

Date: Saturday, April 25, 2009

Time: Sign-in @ 7:30, Start Time: 8:00am

Where: Klein Oak High School track

Early Entry Fee: $15.00 adults/$10.00 K-8th grade

Day of Walk fee: $20.00

Each Participant will receive a "Race For A Wish" t-shirt. Donations accepted! If your company or organization would like to be a sponsor (your logo on the t-shirt) contact Lucille. Not an early riser?  Can't make the event? No problem -- you can Sleep For A Wish and still get a tshirt!  Contact Lucille at: lrowley@kleinisd.net, or Patty pkravetz@kleinisd.net or Darla dsparks@kleinisd.net.

Rock The Cradle - 10/24/09

Our friend Barry is already planning his Rock The Cradle event scheduled for Saturday, October 24:

 wcsk8.com  or rockthecradle.wordpress.com

Last year Barry's event raised 10k for the JohnnyKicksCancer fund.

The Jonathan M. Romano Memorial Skate Park - 3/26/09

The City of Galveston

And last, but far from least -- The City of Galveston will vote March 26, at 4pm to rename the new Galveston skate park in Johnny's memory.  Mike and I had no idea our friends submitted the proposal to the Parks Board who voted unanimously in favor of the proposal. I bought Sophie and Joey with me to the Parks & Recreation Board meeting, and we were touched by the number of people who came and showed support -- in the middle of a work day!  Not sure how many people attend the meetings outside the P&R Board members, but this particular day was standing room only.  

Brax and Rebecca (authors of the proposal) spoke to the Board about why they wrote the proposal and what a great kid Johnny was, then Rhonda spoke in support as well. I tried my best to keep my composure while telling the Board Johnny's story, what a special kid he is and how honored our family would be if they supported the proposal. One very sweet gentleman on the P&R Board spoke before they voted and said, "I know men aren't supposed to cry, but this story really touched my heart."  When the Board gave their 'I' vote, my 'I' was the loudest -- of course it didn't count, but I had to vote... 

Now it's up to Galveston City Council to vote in favor of the proposal.  The Council meetings are always open to the public -- I checked to make sure if I posted this information I wouldn't get in trouble if a ton of Johnny supports showed up.  BRING IT PEOPLE!  Don't forget to wear you Johnny stuff!  Mike and I think it's incredible that our friends thought about Johnny and our family enough to do this, and it's beyond words the City of Galveston supports us as well. 

Last Saturday night after the kids were asleep I decided to Google Johnny.  He still pretty much dominates the first 15 pages -- with the exception of some old baseball player named Johnny Romano sprinkled here and there.  As I was surfing through my Johnny's info, I stumbled across this:

johnnyromanowasthes**t

Just to let you know -- I have no idea who these people are and they didn't contact us for our 'approval'.  As far as we know, money made from the sale of this shirt isn't designated to any non-profits we support (MAW, GCRBC, TCH, etc...).

MAKE A DIFFERENCE

Strength in numbers!  If you would like to write the National Cancer Institute (NCI -- they fund the most clinical trials) and ask specifically for more childhood cancer research funding here is the email address:

ncirecovery@mail.nih.gov

One interesting bit of information I learned about Bills and Acts -- when the government passes an Act or Bill, that is only the first step.  Funding for them is the hard part -- they must be voted on as well -- sometimes years later!  

This is what I emailed them:

Dear NCI Office of Advocacy Relations:

I am a mother of three -- two of my children will be luckily enough to have a long, happy and healthy life.  Our middle child, Johnny, is not so lucky.  At the tender age of 7, he was diagnosed with standard risk ALL.  The medical staff at Texas Children's Hospital (3rd best children's cancer hospital in the country) assured my husband and I Johnny would be the 80-90% of kids who make it to be a long term survivor and beyond. We considered ourselves to be one of the fortunate families because Johnny seemed to stay strong throughout most of his 31/2 year protocol.

Unfortunately, at the age of 10, and just a few months before Johnny's protocol ended, his ALL relapsed.  During induction he became septic, then after numerous bacterial infections and fungal infections in his lungs his 'standard risk' ALL morphed into AML.  Johnny lost his battle with leukemia on September 23, 2008 -- or what would have been his last day of treatment had he not relapsed.  No one can explain why he relapsed or why his ALL morphed into AML.  The team of highly skilled professionals at TCH were amazing -- they not only treated Johnny, they loved him as well.  

Johnny's story is heartbreaking on many levels, but the fact that his cancer always stayed one step ahead of the best care on the planet is tragic. Until researchers have the funding to understand, learn and conquer childhood cancers, they can only attempt to treat cancer -- one symptom at a time. Treating children using this type of 'protocol' leaves researchers, families and children always steps behind the ever changing cancer cells, never getting the opportunity to be in the lead -- or at the very least, a chance to catch up.

Please don't let childhood cancer research funding become a priority only when your child has been diagnosed. Use the funds allocated from the stimulus package to help researchers lead childhood cancer treatments, not the other way around.  

Warmest Regards,

Julie Romano